Treatment time scales so different with various NHS Trusts!

Hello Osca2023 A warm welcome to the online Prostate Cancer Community.  An interesting journey to date but I think it mirrors that of  most people - we all have had some form of issue or delay.

I am two years into my HT/RT journey and living in Oldham - I am under 3 different trusts and the GP practice - Northern Care Alliance Manchester University Trust and Christies - to be honest - apart from having  push for  my TURP operation - there have been delays in my treatment - but with me chasing appointments - it's been nothing to worry about.

Overall the NHS have been great with me, they have saved my life at the start of my journey with some prompt action and being  a pro-active type I have got on well with everything.

I am aware with strikes, more cases of Prostate Cancer being diagnosed (people are becoming more aware of it) , and the general cut backs delays are just part and parcel of the journey -I know they shouldn't be!!

I would say in your case 5 months from the start of Hormones to Radiotherapy is about the norm these days - but it's not  an issue as the Hormones will be doing their job.

(You can follow my journey by clicking on the icon of the beach)

Best wishes - Brian.

Hi Osca, we had to chase everything up as we we went through the diagnostics. At each stage we made it known that we were prepared to drop everything and go to the hospital for late cancellations of appointments. That speeded up the process. We were told all the way along that radiotherapy would commence 3 months after starting radiotherapy - and it did! But we have since learned that there is a national shortage of oncologists and with increasing demand for their services, industrial action etc, men at our local trust are now having to wait 6 months for RT. Prostate cancer is considered a cancer that can safely wait as men are taking the hormone therapy which prevents the cancer from growing. Knowing just how stressful the 3 month wait for RT was for us, I would suggest that a 6 month wait would be very damaging for patients’ mental health. 

the other effect of this 6 months wait is that travel insurance is prohibitively expensive until the RT has been completed - or so we found!

We aren't under the same trust as you but have a read of our profile for our dates and treatment timings. In a nut shell husband diagnosed end April and had last chemo session on 17 November and during this time he had a MRI scan, a pet scan, bone scan and chemo so things did move quickly but I did spend a lot of time on the phone chasing appointments. Initially we went private and then transfered to the NHS and I think got lost in the system although the hospital didn't agree 

Many thanks Brian, it's somewhat reassuring to be told that my time-line is similar to that of others.

I was concerned that the hospital RT department etc. didn't seem to be interested in monitoring my PSA level hence requesting a blood test myself. I'll be getting that done in the next week or so then will know where things are. My new GP was very understanding at my request and the request to shift the sequence of HT implants hopefully to allow a long European holiday in June/July.

Rod

Thanks for your reply Worriedwife I feel that it's time I chased up my RT as I was told originally that I would be called for the first appointment with the RT / oncologist in mid December but on enquiring I have been told that has slipped to mid February. A phone call is necessary I feel!

Luckily my wife and I are people that see the world in a very matter of fact way and (most of the time) take it all in our stride. My wife is extremely supportive and is involved in all consultations and decisions. We also have a very good and long term friend a who is a recently retired GP to call upon for his thoughts.

I am also very open to all around me both relations and friends telling them of my diagnosis and progress. This helps me and hopefully them should they be in a similar situation.

Rod

Hi Shar  congratulations to you and your husband for passing through what sounds to be a very successful and not too stressful treatment program. May 2024 bring you a much happier year than its predecessor.

Rod

Hi Rod

One thing that may help is to download the NHS app and ask your G P Practice for FULL access to your records on the app.

I am still under the hospital for my 6 monthly PSA tests but these are done by shared agreement by my G P Practice so I see the results as soon as they are available - it just makes life easier.

Best wishes - Brian.

Rod, we had some trouble getting travel insurance but finally found two companies who would insure us. Let me know if you want more information 

Hi Brian,

I do have access to my NHS records but having changed GPs the records from my previous GP are not shown, they were prior to moving!
I've asked what has happened to them and all I get is that they have not yet been transcribed from the old GP! What the hell they are doing god knows I thought we were in the 21st Century where computers were able to talk to one another but it seems not. This is where our NHS falls down, not clinical staff problems it's 90% disgraceful management and all the way to the top.
I have an ongoing complaint about our Trust and the way that they handled my attendance at an A&E department, that started on the 22nd February 2023. They issued a report on it after some sixty weeks which was a complete whitewash. I tore it to shreds in writing and they re-opened the complaint, a further report on that has yet to appear. It will soon be twelve months since I raised that complaint and it was all about the failings of two individuals and an operational process.

Hi Rod

I have had amazing service throughout the NHS on my Prostate Cancer journey - yes there have been issues but they have been sorted out.

I sympathise with you regarding the NHS management - my wife was a frontline NHS nurse for over 40 years with both mental health and A & E jobs to her name. She disagreed with management and was sacked for voicing her opinion - only for the Courts to overturn the sacking and she was re-instated - that took over 2 years - and we were awarded costs - but management!! I know just how you feel.

Best wishes - Brian.